Kirk's Blog

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Kirk started writing articles for his blog around the time his first book was published (September 2011). Not having any other bright ideas at the time, he adopted the book title as his “brand” for the blog. Over time, Shaky Paws Grampa (SPG) has become his “identity” in the PD world. The good news is that he hasn’t had to fight anybody for it and there was no competition for the web address (understandably).

He didn’t have any clear goals in mind for the blog when he started other than to make his target audience the “PD world”, opting to write about what ever inspired him at the moment. Over time, various themes emerged:

Book or writing-related
PD-related information
Clinical research study advocacy/participation
Cognition issues
Living with PD-personal
PD meeting/conference announcements
SPG speaking engagements, media interviews, and webinars
Calls to action
Personal

Three years later, he has posted 120 articles that have been viewed by readers from over 60 countries around the world.
Kirk Hall

An Open Letter to Linda Ronstadt and Neil Diamond

 

 

Dear Linda and Neil,

 

I know it is highly unlikely that you will ever see this but I am going to write it with the hope that you will.  

I am going to talk to you both as friends, though we don’t know each other.  You may not know this yet, but by virtue of having PD you have become members of what I like to think of as the “PD family”.  It took me a couple years to realize this.  Any time I am with fellow PwPs (people with Parkinson’s) and  their care partners (our term for caregivers) there is a palpable sense of love and caring unlike anything I have experienced outside my immediate family and close friends.  We are willing to be honest and open with each other because we know we are in this together.  We want to do anything we can to help each other in ways that are both large and small.  We want to improve the quality of our lives and those of our families and loved ones.   This gives us strength and hope.

My wife (also Linda) and I attended our first World Parkinson Congress (WPC) that was held in Montreal in 2013.  We also attended the 2016 WPC that was held in Portland. Preparations are currently under way for the 2019 WPC that will be held in Osaka, Japan. These are amazing international events where members of the PD medical and research community from all over the world, representatives of Parkinson organizations (like the World Parkinson Coalition,  Michael J. Fox Foundation and the Parkinson’s Foundation) suppliers of PD goods and services, as well as PwPs and care partners.  It was at that first (for us) WPC that I really began to realize the scope and uniqueness of the universal caring that I am trying (inadequately) to describe.  It was overwhelming.  It was also at this time that I became fully committed to trying to find ways to “give back”.

My hope for both of you is that you will find ways to experience this yourself.  For some, there is a natural tendency to isolate themselves and deal with PD in private.  That may not be the case with you.  If it is at all true for you, I strongly encourage you to fight that urge and engage the “PD world”.  If and when you do that, it benefits us all.  I realize that I may be “preaching to the choir” since there are other celebrities who are highly engaged (Michael J. Fox, the late Muhammad Ali and more).  If you are interested in exploring ways you could become involved, there are many resources available, the most obvious being to talk to someone who lives in the PD world, like Michael J. Fox.  I am sure he could come up with a variety of good ideas.  Another option would be the Executive Director of the World Parkinson Coalition, Elizabeth “Eli” Pollard (email: eli @worldpdcoalition.org) who is involved with just about every aspect of the PD world.

She could provide input regarding a specific idea.  There is an organization that provides singing opportunities  and voice therapy for PwPs called Tremble Clefs.  I sang with them at the last WPC at Portland in 2016.  The driving force behind this organization is Karen Hesley (khesley@hotmail.com) who created a group in the San Diego area.  Tremble Clefs is therapeutic for voices as well as cognition and often has a very positive effect on quality of life.  Perhaps you would be willing to explore ways to become involved in expanding this life-changing program.

I wish you all the best in your PD journeys.  Thanks for listening.

 

Sincerely,

Kirk Hall

PD Advocate

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Kirk Hall

Legacy

It is 4:30 in the morning.  I do a lot of my “deeper” thinking during the night.  It seems like I have better “clarity” at that time.  Possibly because there is less mental traffic to clog my circuitry.  Another possibility is that my judgement is not great at that time, which leads to ideas that “lose their luster” in the light of day,

In any case, I have been thinking about the above topic since writing the piece yesterday morning about Robin Williams.  I think most of us, or at least some of us, think about what our legacy will be from time to time.  That may lead to thinking further about what we would like it to be.  I spent a lot of time in my business career doing strategic planning.  One of the most important parts of this process was deciding “where you were trying to go” as an organization.  Later in my career I had a business that helped people with career planning which often started with the individual answering the question “what do I want to be when I grow up”.  In other words, developing an individual strategic plan.

That is all any of us can really do when it comes to our legacy.  Imagine someone describing our legacy at some point in the future and what we would like to hear them say.  Then we at least have the opportunity to do things that might lead to those comments after we are gone.  Because legacies can’t really be built.  They are described in hindsight.

When I look back at my career “pre-PD”, it seems to me that much of what I did in my business career was preparing me for what I have been trying to do as a PD advocate (my current job description).  If I had died at 59 instead of being diagnosed with PD, I can’t imagine my legacy being very memorable when it comes to my career.  Actually, I think my legacy would have been the wonderful boys that Linda and I raised.  I still believe that will be our most important legacy.

So where am I going with this?  I better get back to that or I will lose the thoughts that got me out of bed.  Regarding my “advocacy career”, I feel that I am doing work that is personally meaningful for the first time in my life.  That is a real gift!  I don’t spend a lot of time thinking about what I am going to do.  One thing leads to the next thing and so on.  It has been that way since I was diagnosed.  It has become more challenging to maintain my “forward momentum” the last couple years.  But each time I have “slowed down”, it seems that I eventually have been motivated to “re-enter the fray”.  I don’t really know if anything I have done or will do has any lasting value.  That is not and can’t be my motivation.  That will be for whoever is in charge of describing my legacy to decide.  I am just grateful to have had the opportunity to finally do something that seems important.

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